Having a Chronic Illness in Your Youth
Your 20s and 30s come with plenty of complicated new life problems: starting your career, finding love, debt, self-discovery, moving out on your own, etc. When you add chronic illness to the mix, especially if you are in the process of being diagnosed in your 20s or 30s, it adds a dimension to your life that most of your peers cannot relate to at all. The things that your peers do to blow off some steam when they are stressed may not be things that you are able to do on your sick days. Older adults tell you that this is the time in your life to do the crazy stuff and live it up before you settle down, but having a chronic illness at this age may mean that this piece of advice feels like more of a reminder of all the things you are missing out on. Sometimes, you feel like you cannot relate to anyone else around you.
Your friends will make tons of plans, take lots of trips, party all night long. You will need extra rest, sick days, and scheduled time for medical needs. They are on a first name basis with their favorite bartender, and you are on a first name basis with your favorite phlebotomist. They may have extra money to spend on frivolous things and splurge buys. You may spend every spare dime on your medical care. They are throwing all their extra time and energy into building a fabulous career, but you may be struggling to hold a job at all, depending on the severity of your illness. They are starting to have children, and you are wondering if you will ever have the energy to have a family. Your friends that are the same age may not be able to relate to your experiences, but if they are friends that try hard to respect you, they will learn to adapt to be more inclusive of you. They will listen with a kind ear and never hold it against you when you have to cancel. Still, having great friends does not completely negate the experience gap that you feel between yourself and your healthier peers.
The loneliness of being in a completely different place in life from your peers can be frustrating at times, but there’s a few things that I do to take care of myself when this aspect of illness gets me down. First things first: when I find myself struggling because I am seeing the social media posts of all my friends’ exploits, I give myself a social media break. It really helps me to take a break from looking at what I feel like I am missing. I find something to do that will make me happy, even if I am not feeling the greatest. This might look like starting a vegetable garden or reading a good book or trying out a new recipe or hanging out with a good friend on the porch. The best part about this is that I can tailor the activity to how I am feeling that day. I also always take advantage of the really good days! I try not to overdo it so much that I actually feel sicker afterwards; however, I have to use these days to do the things that make me actually feel my age. I may go out for a drink with friends, have a beach day, go to a local festival, take a walk around the city, etc. I focus on the things that I wish I could do on days that I am too sick, and I save them up to use on a good day.
Lastly, I found friends that just “get” it. Having another young chronic illness friend will remind you that you are definitely not alone in this. These friends may come from local disease-specific fundraisers, meet up groups through patient organizations, or through different online platforms. I have met some great chronic illness friends through all of those avenues, and I have even found some with the same rare condition. Having an overall positive chronic illness crowd around you can make a drastic difference in your approach to dealing with chronic illness in your 20s and 30s. Have other ways of coping with the “Fear of Missing Out” in your youth? Leave them in the comments for all of us to see!
Chronically yours,
Jen
